Help - TICKED OFF and have ????

Tabatha00

Yesterday I met with my oncologist for my first "official" visit with him to map out my chemo plan and to schedule chemo.   Well I got sucker punched in my opinion.   Apparently my CT showed "multiple enlarged nodes" but the ultrasound of my axilla nodes showed everything was clear.   My Dr is confused by this (yeah me too) so now I have to have another ultrasound and they are going to biopsy one of the enlarged nodes.   I know the cancer hasn't spread to my organs or anything because I've had all the tests and scans and was told this by my breast cancer team at my initial appointment on June 10.   WHY am I just now finding out about the nodes?    I feel like I have been sucker punched.

I am triple negative and my tumor was 2.5 cm.   I had an excisional biopsy on May 22 (when this ride got started).  IF I have some nodes involved somebody PLEASE tell me this is not the most horrible thing to happen.    My oncologist speaks Dr but is HIGHLY recommended in his field which is why I am going to him. 

I just can't believe I'm just now finding out about the enlarged nodes in the CT.    I'm confused why the ultrasound didn't pick it up.   I'll find out soon but I'm just so pissed about it.

I start chemo on Thursday.   I'll have 4 Adriamycin/Cytoxin's once every 2 weeks and then I'll have 12 weekly Taxol.   After that I'll be having bilateral mastectomies and depending on the results of that surgery I may or may not have radiation.   If I have positive nodes I WILL be having radiation.

I need reassurance.    

vhqh

Sounds to me like your Onc has your best interest at heart and is being thorough in checking these nodes out.   I would be irritated too and like many on here have learned to get copies of all reports and test results.  That way I know to ask about things if my Onc doesn't bring it up.

Having positive nodes is not the end of the world just as having clear nodes does not mean the cancer hasn't spread, there is a higher potential for spread when it is in the nodes and that clues the doctors in to be more aggressive in treatment.

angelsabove

Tabitha,

I too felt that way. I did all the scans prior to surgery. Was told the lymph nodes even looked clear. Then 2.5 weeks later I had surgery (double mastectomy) and surgeon told me she did snb biopsy and it tested positive so she took more from the axilla. She called me the next day and said I had 3 out of 13 taken that tested positive. Chemo prior to surgery was not mentioned to me. So I did surgery first and I am in the middle of chemo now. I did not even know I was triple negative until AFTER surgery. I had a core biopsy done weeks prior to surgery and was just told I had IDC. Which is what 80% of all women with breast cancer have. This is such a roller coaster. I know it is SO TOUGH.....I do know that many women come on to these boards and they had positive nodes and they are years out from treatment. I am 36 and struggling just to get through the days. Just know that you are not alone. I dont get the whole node thing. To me it seems as though that would mean they are doing THEIR JOB. I just know that they say chemo is suppose to work really well for us. WE JUST HAVE TO PRAY.....

May God Bless Us All

angelsabove

Tabatha,

Also wanted to share that my mammogram and ultrasound showed tumor was 2.5 to 3.0 centimeters. When surgery removed it......The darn thing was 4.7. I just dont get it. I did talk with some other women on the boards and I was told (ya know scans arent 100%) boy I learned that one....AGAIN THERE ARE WOMEN WHO ARE LONG TERM SURVIVORS WITH NODE INVOLVMENT. That is the thing I have to try to remember....

May God Bless Us All

tibet

Tabatha

Why did they not do the surgery earlier? How did you wait between biopsy and surgery or chemo?

In my case, my biopsy was DCIS and they told me to wait 3 weeks for a surgery. After mastectomy, they found a 1 cm IDC encased within the DCIS. In ultrasound and MRI before surgery, no nodes at all but after surgery, they found a 1mm micromet in one sentinal node. They took like additional 20 node out in the auxillary and all were negative.

Tabatha00

Well after I had my scans there was a small tumor dangling from the lower pole of my kidney so it had to be removed FIRST.    It was renal cell carcinoma, grade 1 which is the slowest growing kind.  We had to confirm it wasn't related to the breast so I had a biopsy and surgery.  

I just feel like I should have been told about the nodes in my visit June 10 and not August 28. 

renahen

Tabatha, I'm so sorry that your were so taken by surprise. I hope the nodes are negative, but it's true that even with positive nodes you can go on to do fine. I had 22 positive nodes in 1986 and am doing great. Your doctor will use the nodes as an indicator to determine treatment. Wishing you the best, Rena

MsBliss

Oh yes, there are many node positive long term survivors.  In the "fear of mets" forum there are quite a few who are 8 years and more NED...some of them had 10 and more positive nodes.  Please know that positive nodes are extremely common and many women are surviving and thriving.

angelsabove

msbliss,

I would love to visit that forum. I am learning to navigate this thing so I am searching for it.

May God Bless Us All